Lessons and love from Alzheimer's World

Lesson #22: The Stink of Stigma

I became interested in Zach Anner, an up-and-coming YouTube celebrity, because of my friend Christine. She, too, lives life from a wheelchair, diagnosed with cerebral palsy at birth. Currently working on her autobiography, Christine’s memoir opens with “It was lonely being a child in a wheelchair. I was bullied.” In an online interview with Oprah, when asked to identify his biggest challenge, Zach makes a touching admission: “Figuring out that I’m worth this experience, because it’s hard for me to accept that I might deserve this.”

The stink of stigma
Why are we mean or dismissive to people who are functionally different? What is it that makes us shy away from interacting with them? Or, even more bizarre, what makes us want to lash out at them? According to one source, stigma is “a cluster of negative attitudes and beliefs that motivate the general public to fear, reject, avoid and discriminate against others.” Synonyms suggested for stigma in the dictionary include shame, disgrace, and dishonour.

Like Zach, people with dementia struggle with an affliction beyond their control. Like Christine, they depend on others for daily living. And like Zach and Christine, many of them feel unworthy, as a result of the way society generally views and interacts with them. And yet there is nothing shameful or disgraceful about having either cerebral palsy, autism, deafness, dementia, or any other physical or mental disorder.

The stigma of shame
Stigma goes both ways, obviously. If you sense that others are judging you and finding you lacking, your self-esteem and sense of worth are deeply affected. On top of everything else, you feel shame. Stigma is what made Carole Mullikenwrite this beautiful post when she was given a dementia diagnosis.

It isolates people, too, because going out in public is a challenge; societal stigma burdens them even further. I see this in my mother – a wariness in her eyes when I encourage her to come out shopping, call her friends, do anything sociable. Whether or not she is aware of it or wants to admit it, she fears being judged by her memory loss, her inability to talk, her confusion.

My mother was very eloquent before aphasia robbed her of this superpower. She stood at the podium and addressed the women in her group as their President for many years. She taught high-schoolers and English as a second language, was involved in politics. She was the communications hub for the family – checking in on all five children regularly, keeping us informed about each other and organizing regular get-togethers. She was that person who could talk on the phone for hours and hours… and she always had time for her friends, who turned to her with their woes and problems. To put it mildly, language was a significant loss for her.

Seniors with dementia face a medical stigma, as well
If a child is born mute, there are systems in place to help that child get by without speech. If someone loses their ability to talk as a result of stroke or brain trauma, they are automatically offered speech therapy. So why not for people who are diagnosed with Alzheimer’s-related aphasia? It doesn’t seem to be available even by request, at least not here in Quebec. Kate Swaffer, my dementia hero, is lobbying in Australia for new care guidelines, which would include speech therapists (along with grief counsellors and other compassionate interventions) for people with dementia. I hope she succeeds and I hope it catches on.

In the meantime, though, I’m appalled at how forgotten our seniors are by society, by the medical profession and by the organizations that thrive despite their mindless approach to something as simple as “quality of life”. It’s as if we’re disposable when we reach a certain age and/or level of competence. Finis. Kaput. Pffft.

And do we really need words?
Another thing our society has forgotten is how to communicate without words. We’ve lost touch with that part of us connected centrally, the part that existed before you learned language. The part that reacts chemically to others, beyond words. It’s the same part that makes you sigh or gasp at something beautiful, smile at babies, cry in abject joy… and it’s the part that makes you yearn for human touch, yearn to be heard and to be seen…

I don’t think that ever goes away. It’s there in each of us, and even when we can’t communicate in ways we’re familiar with, it’s connecting us anyway. We just have to acknowledge it, be comfortable with it, and let it do its magical healing thing. Like the angelic and deeply compassionate Naomi Feil does, for people who are deeply into Alzheimer’s World. Watch how she talks to Gladys in this heartwarming video.

Positivity and love do not require languageThat’s one of the important things I’m learning on this incredible journey. The more positive I choose to be, the more positive the energy around my parents becomes. The more positive energy around them, the more they will respond in kind. It’s not rocket science. What goes around comes around. But in terms of quality of life, this is huge.

When I see my mother laughing and hamming it up for the caregivers, or dancing her way out of the hair salon, I’m so happy for her I could cry. And I do. At the same time, though, I’m reminded daily (thanks to Susan Macaulay and her Facebook page “Report Elder Neglect and Abuse”) of the many unfortunate other seniors who are over-drugged and sitting in chairs in residences. They need our love, too. A big shout-out to those volunteers who take time to visit our seniors in residences; such an important role.

I know it sounds hokey, but let’s try speaking the language of compassion more often. It’s love from the gut. It talks in ways you can’t with words. It’s trustworthy, too. And it’s been in you and around us forever.

“I personally think we developed language because of our deep need to complain.”
– Lily Tomlin

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4 thoughts on “Lesson #22: The Stink of Stigma”

Such a wonderfully written piece. It is true that we don’t always need words to express our love. As the mother of an autistic spectrum child, I have learned that there are many ways to communicate and one of the most powerful is your mood or intent, not your words.

Thanks for the shout out and re: “When I see my mother laughing and hamming it up for the caregivers, or dancing her way out of the hair salon, I’m so happy for her I could cry.”

I did cry, many times, and I bet you do too. For me, it was/is a wave of pure gratitude for a simple something that brings such joy. Those are the amazing “up” moments we are privileged to witness and be part of. #Thankful